02 Lets Feel Better w/ Ilana Jacqueline (episode page)
Description: Ilana talks about failing alternative medicine, how she manages her career, blogging and her work for Global Genes, the horrors of GI testing, crying in parking lots, and attempting wedding planning while living with a very unpredictable, and very time consuming chronic illness. She lives with a primary immune deficiency disease, dysautonomia, and Gastroparesis.
Hey there, welcome you to In Sickness + In Health—a podcast about chronic illness, disability, medical traumas, and everyday uncomfortable healthcare experiences. My name is Cara Gael; I’m not a doctor or medical professional, I’m just a person and a patient who really wants to talk about this stuff more. This podcast or any of its associated content does not constitute medical advice, I want to be really clear about that. If you’re experiencing a medical issue, please seek qualified medical help. I know the system sucks, I’ve been there, but I wish you a lot of luck.
We’re all going through this together, but I can't stress enough how different we all are, even if we were to have identical medical files. There are so many factors that go into shaping a person's experience of health and illness. Just because something worked for one person does not mean it will work for you or anyone else. I want to ask my audience to respect the very personal decisions of my guests, and remember that the choices of others do not affect or reflect anything onto their own choices.
The In Sickness + In Health podcast will be about telling our stories as patients, and talking about important issues related to health. If you want to know why I think these topics are so important, go back and listen to our episode, “Welcome to In Sickness + In Health.” I explain why I started the podcast, what I’ve learned along the way, and what I hope the show will be.
This is the third episode in a series of interviews with dysautonomia patients for the last week of Dysautonomia Awareness Month. We’re putting up a new episode every day, so keep an eye on your podcast feeds or find us at insicknesspod.com. If you want to learn more about dysautonomia, go back to episode 1, Dysauto-whatta?. Lauren Stiles, the president of the non-profit group, Dysautonomia International, gives a crash course on just what dysautonomia is, and we talk about diagnostic delay and some of the research her organization has been able to fund. The second episode in this series is with Cathy, a musician and mother, who talks about trying to find balance in managing and thinking about her condition, The Spoon Theory, parenting with chronic illness, how her condition has affected her music career, and even shares a couple songs about her illness. Later in the week, we’ll have two more episodes with other dysautonomia patients that have different primary diagnoses.
[Ilana talks about failing alternative medicine]
This interview is with Ilana, a freelance writer, patient advocate, and the managing editor for the blog at Global Genes, a a leading rare disease advocacy organization. She has also used her own blog, Let’s Feel Better, to chronicle her experience with a Primary immune deficiency disease, dysautonomia and gastroparesis, which is a paralysis of the stomach muscles that can slow or stop gastric motility. I’ll include links in the show notes were you can learn more about each of these conditions. I’ll also include a link to Ilana’s blog, Let’s Feel Better, which was one of the first patient blogs I read after I was diagnosed with POTS. I’ve continued to follow her work for the past couple of years, so it was great to get to talk to Ilana about how she manages her career, the horrors of GI testing, crying in parking lots, and attempting wedding planning while living with a very unpredictable, and very time consuming chronic illness.
I remember reading about Illana’s port saga as she blogged about it. Many patients who get regular infusions are fitted with semi-permanent access devices that skirt around the problem of bad veins. But like Illana pointed out, her immune deficiency complicated things. There is an infection risk for everyone with these devices, but not being able to fight those infections were what her doctors were worried about.
A port is a little reservoir that can be injected with medication or hooked up to an IV. It is implanted under the skin in the chest, and is connected by a catheter to one of the large veins. But before the port, Illana was fitted with a PICC line, which is a tube threaded through an artery in the arm, over the shoulder and into the heart. The placement of these devices are fairly routine procedures, but like a lot of things for Ilana, the process was anything but routine.
Oh, did you think I was gonna do a podcast about chronic illness and not talk about poop? Well my friend, you were sadly mistaken. Everybody poops! and the chronically ill, we poop a lot, or not enough. Either way, it’s something we’re gonna talk about a lot. Like right now. We’re about to start talking about preparing for gastrointestinal testing, which is not fun for anyone, and really pretty grossIn order to get a good look at your GI tract, all remnants of food and waste need to be cleared out. This means using one of a variety of preparations to make you poop your brains out. Your brain won’t actually come out of your butt, but it sure can feel like it does. One of the more unpleasant products, and one Ilana has had extensive experience with, is called GoLYTELY. The name makes it sound fun and inoffensive, but the combination of polyethylene glycol and electrolytes is anything but. It draws water from your bowel to clear everything out, and it makes for hours and hours of abdominal cramping and diarrhea. For bowel prep, you have to drink FOUR LITERS of the stuff, and that’s especially not fun if you’re already having GI problems.
[rest of interview]
Thank you so much for listening to In Sickness + In Health., I hope you enjoyed this episode. If you did, subscribe and stay tuned for everything we have to come, and check out our other episodes celebrating Dysautonomia Awareness Month that are up this week! We’ll have a new episode up every day. You can find us at insicknesspod.com and on Twitter, Tumblr, and Instagram @insicknesspod.
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